A Plump 121#

Over the last week, my weight plunged to 114# after I developed a fever and had bouts with nausea and vomitting. It is pretty hard to drink of your own volition if your stomach feels bad. So I was not doing a very good job of keeping myself hydrated and consequently I couldn't eat either. But today I drank not 1, not 2, but 3 carnation instant breakfast drinks and then came to my weigh in here at the clinic. To my surprise my weight is back up to 121#. Yeah! That means I am slowly getting back the weight I lost from the chemo regimen and all the nausea.

My Dad and Lynn arrived last night after traveling up from Charleston. Dad was up first thing this morning making fried eggs and potatoes for breakfast. Tonight he is going to cook a fish dinner with green beans and cooked carrots. He's a great cook so I should be able to continue this upward trend on my weight during this week.

We had a great thunderstorm last evening with plenty of rain. Everything is so fresh and clean this morning. The plants look great too. Quig and I took a walk spying on the bluebirds and goldfinches and purple finches lighting in the field behind the house. The workers were out in full force this morning building, building, building on the new homes going up in the neighborhood.

Today my energy level is good, and I feel very rested, hopeful, and positive. I 've seen my woodpecker at the suet with his bright little red cap this morning. So I've had my highlight for the day.

IN Remission!

Today's biggest news is that my bone marrow biopsy came back with a hypocellular marrow, i.e. I am in remission. And today the white count was just a bit higher than yesterday also suggesting that my body is starting to repair after the chemo. Both are terrific news, of course. Holly and I are very happy. :-)

Follow up from the fever earlier in the week: I did grow out a bacteria from both of my blood cultures that were taken on thursday after my fever spiked. The bacteria is a type of staphylococcus which is one of the common skin bugs that we carry on our body. Most of the time, this is not a problem. But then most of the time, people have infection fighting cells to combat them, and I don't. I will remain on these antibiotics for a total of 10-14 days to completely get rid of the infection and prevent it from getting onto or into my catheter line. I did get some more blood today too since my hemoglobin level was back down to 8.3. Today's picture is of me and my nurse Dana, hooking up some juju juice through my catheter.

This morning we visited with Kristen (a little bit) before we had to leave to head to the clinic for my appt time. She was too kind and came over to mow our grass for us. Thank you Kristen; you did a great job! I wish I could do it myself and didn't have to accept the help. But I am getting a bit better at accepting that sometimes you just do-need help that is. Thanks again for driving all the way over here to do that for us and to chat a bit about your life. Sorry we had to miss Jana.

It's a late entry today, and I should have more to say, but it's been a very emotional week. I'm tired and need to gear up a bit for my Dad and his wife Lynn who will be arriving for the week in about 2 hours. Tomorrow is the start of a new week...looking forward

Things That Matter

I had my second day of antibiotics yesterday for the fever I developed on thursday. No wrinkles, smooth as glass, just took a while for us to get in to the clinic, get all three abx, my platelets, and a bag of fluid. But I started feeling better about half-way in there so yesterday turned out to be a good day.I was even able to eat a real dinner with chicken, peas, gumbo soup (my fave), and peaches.

After dinner, we watched the movie "Sliding Doors" with Gwynnth Paltrow where she misses the subway and hence does not catch her boyfriend having an affair with his ex-girlfriend, and in another version she makes the subway and does catch him. The movie shows lots of little takes on how small things, esp timing, can make all the difference in the world. It was done in 1999, but I really liked it. I usually enjoy those movies with the whole time traveler thing-you know the Bostonians, the Lake house, etc. I can't wait for them to make that excellent book, "The Time Traveler's Wife" into a movie. Maybe that got derailed since I haven't heard anything more about it. In my version, Tom Hanks plays the guy who keeps getting bumped up and back in time. And yes, Gwynnth Paltrow is my choice for the woman. The daughter would be played by Dakota Fanning.

For the first time in I don't know how long, I slept all the way through the night (some of you would question that statement since I am up at 5:37a on a Saturday writing this, but that used to be my normal wake up time so it isn't odd for me). The first thing I thought of was how much better I felt already than the day before, and certainly than the day before that. Thursday when I had fever and chills, I was so weak and out of it. I'd never felt that bad (and you know I have chemo to compare to). One thing I realize in all of this is that as you go down and feel bad, you think this is the worst you ever have or could feel and then another day proves you wrong. No that day is the worst you've ever felt, etc., etc., etc. But then when you start coming back to normal, those same kinds of days are better than what you experienced yesterday, they are an improvement even though you're weak. So you see it really is relative. What would have been a bad day gets turned into a good day because there is less suffering than the one you just experienced. I call that the cancer gift. The ability to recognize that suffering is a part of life but not to get too tangled up in it.

When I woke up this morning, I was thinking about this concept, and about all the things I am thankful for. It is a long list, of course, and I won't bore anyone with it here. But I do think it helps to take stock from time to time of the things that matter. I do want to share that list, see below.

Teresa's List of Things That Matter Most (a partial list I am sure)

friends, family, lovers

pets

a good job with supportive co-workers

books

time for conversation

birds at birdfeeders

a beautiful garden that you, your neighbors and the birds/butterflies can enjoy

generosity

smiles

time to be alone to figure out what you think and who you are
time to be with others to show them who you are and share who they are

mean something to the community where you live

handwritten letters of thank you or general news

humor (I have Quigley the miniature Dachshund expressly for this purpose)

tell people how important they are to you and how much you love them

hugs

our society is going so fast; do what you can to slow down to a more natural pace at least once each week

travel-to see other places, experience other cultures, and realize there are many different "right" ways to do things

be quick to experience delight and slow to experience anger

treat your body well since it's the one that has to last your whole lifetime-if that means massages and manicures to you, so be it

love things so that your capacity for love just gets bigger and bigger; when you die, you can take all that love with you (I don't have that one on authority, but I am pretty sure it's true)


Okay, enough serious stuff for an early Saturday morning. I need to go enjoy some coffee time with my gf while I watch the birds at the feeder hovering over the butterfly bushes and purple coneflowers. See, it's already a great day! -tree

My Five Donors

We are here at the the clinic getting my antibiotics for the fever I had yesterday. I was up with fevers of 103.5F and 102.0F last night that wore me out. I feel lots better today since my temp is back down to the normal range. My platelets are low again at 6000 so the nurse is hanging a platelet pack as we speak.

I met with Tanya Helms, the Physician Assistant for my doctor to go over the donor typing for my sisters. They are a perfect match to each other but not to me. (The chances are 1 in 4 for a sibling match). However, they have identified 5 donors in the registry who match my profile. Over the next month, they will contact those 5 donors, ask them to be re-tested, and determine who could be lined up for the transplant in the time frame we will need.

Right now the transplant feels so far off since I am barely keeping my own with the fever I had yesterday. My weight was better yesterday (up to 117#) but today I am back down to 114#. When I have a bad night or bad day, I seem to slip since I can't keep anything down.

I woke from my benadryl haze at one point to see Ms. Karen Pieper seated near my recliner. What a long time it's been! She works in another part of this building and I guess she knew I was here. It was so good to see her and hear about her Brazil trip, her family, and all the great dog stories (she keeps the dogs for one of the Cardiology fellows who has some kind of small dog called a Havanese). I'll have to look them up because I've never heard of them.

The most beautiful pair of goldfinches were at the feeder this morning. The male was brilliant yellow and the female just a touch less so. They were so delightful to watch while I ate my breakfast.

Today's Excitement

So no sooner had I eaten my lunch that I started to feel cool and shiverrey. I went to put on a second shirt even though it is 95 degrees outside, and the house is 76-77 degrees. So I took my temp. 101.1F Dang! That is a real fever. I called the clinic and they told me to come in immediately. No sooner had my butt hit the chair than they were coming at me with needles for blood cultures and blood pressure checks and urine cultures. A retake of my temp showed 102.0 F. That is a real fever for sure.

I am getting what we call in medicine a "febrile neutropenic" work-up. Febrile just means fever. Neutropenic means the infection fighting cells count is low. In medicine, we treat this as an urgency with blood culture tests for infection, urine culture tests for infection, a chest X-ray to rule out pneumonia and then 3 days of antibiotics until the tests come back to indicate what, if any, the bug or bacteria is. Right now I am taking Ceftriaxone, Tobramycin, and Vancomycin, all through my catheter. Those are big gun antibiotics that can fight many, many different infections. If nothing grows out of the urine or blood, they will stop the antibiotics and let me go back to my other oral meds. You non-medical people are wondering why this is such a big deal. Well the issue is something we call sepsis. Sepsis is when the infection in your body gets widespread and bad things happen. The blood pressure drops, the kidneys fail, the heart can fail, blood clots can form and fill the small vessels everywhere. It is bad news bears. We are very conservative with infection & fever in people with neutropenia because they just can't fight anything off.

We'll be here at the clinic for a while this afternoon but I bet we'll be home by 5pm. That is the beauty of living so close. Thank Goodness for that. They have been so efficient getting me in and getting me treated. The nursing staff here really is top notch.

A Deep Sleep

I woke up this morning with Holly at our usual time (6:30a) and had my carnation instant breakfast drink. But I felt tired and low energy so Holly suggested I try to take nap when she left at 8am. The last thing I remember is her pulling the bedroom door closed and the next thing was waking up at 11:30am. Hmmmm, maybe I need more sleep right now too. I am starting to have that part of the body ache thing they told me I'd have-where you feel like you have the flu. Last night my back and feet and stomach hurt. I had to take tylenol to get comfortable enough to go to sleep. If you've ever had the flu, you know how achey and tired and slow you feel. Just getting up to go brush your teeth seems like a chore. So that is the stage I'm at today.

That being said, my mom is on her way to get us a Frosty from Wendy's. ;-)

The birds have been very nice today with a pair of little woodpeckers and many purple finches. The purple coneflowers look great from my bedroom window and the hydrangeas look great from the LR.

We watched a cute movie last night about Burt Munro, a NZ motorcycle guy who travelled all the way around the world to test his Indian motorbike on the Bonneville Salt Flats in 1967. It is a true story and there is footage of the real Burt in the special features. It was cute and sweet. He was a determined guy and it was cool to see how much her did to realize his dream of getting a real time trail for his bike. I think the name of the movie is the World's Fastest Indian, which by the way, was built way back in 1920. Amazing that he could tinker with that thing to get it to reach over 200 mph top speed.-teresa

Same Rump, a few new holes

They were helping me out in the clinic giving me IV fluids to combat some of this wt loss and lack of energy. Peggy the Nurse Practitioner has to be out of the clinic for the next 2 days so she went ahead and did my bone marrow biopsy. This was the 3rd one-probably the one that was the most uncomfortable despite getting a pre-dose of 1 mg ativan. They did need 6 tubes to do lots of cytogenetic tests so maybe some of the discomfort was from pulling so much to get those spicules out. I won't likely hear anything from the testing until the middle of next week. They will need to look at the % blasts as well as the chromosomal abnormalities. My leukemia has an inversion of chromosome 16 so it will be interesting to see what else turns up.

I came home after the biopsy and took a 2 hr nap. I feel beat. I am going to try a new nutrition regimen to see if I can reverse this weight loss. The regimen will be a fluid drink in my hand or nearby at all times (think Karen and Freddie with their water bottle) and a snack or solid meal every 2 hours. Obviously I can't wait on my appetite to kick in (that just isn't happening) so I will have to force myself to eat on a timed schedule. You know food is not as fun when you have to make yourself eat it. It's a whole lot better to actually want to eat. I am going to get some protein powder to add to foods too.